I can finally breathe deeply, despite my cystic fibrosis
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I was turning a screwdriver to assemble a patio chair when I realized nothing would ever be the same again. I wish I could tell you that this life changing moment happened while I was witnessing a dazzling sunset or while my husband was holding my hand and looking into my eyes with love or while I was snuggling against my dog. But no, that was while I was cursing a screw that just didn’t fit into its thread. That mundane moment became the line drawn in the sand between a time when I thought I wouldn’t live long enough and a time when I thought I could after all.
At that moment, I became aware of my breathing, its clarity and depth, a completely new sensation for me. I realized that there had never been a time when I could breathe so deeply without feeling the crackling of phlegm, without a tickle that turned into a whole body cough. It struck me that the past 51 years have been filled with increasingly short and superficial attempts to catch my increasingly exhausting breath.
I have cystic fibrosis (CF), a brutal lung disease that affects multiple organs and promises a slow, painful progression that eats away at lung tissue until you feel like you’re breathing through a straw as your nose is clogged. Ultimately, you end up on a waiting list for a last resort lung transplant to save your life.
I remember pausing, stopped turning the screw and looked up at the sky. I sat with the moment – gave it space, as they say, to figure out what that glorious breath meant. The depth of it. Clean breath. Breath of a newborn. Free from obstructions like phlegm, bacteria, depleted lung tissue and dysfunctional cells. More riddled with trash, grime, fear and loathing.
Cystic fibrosis is a rare, chronic disease, and those who have it have waited their whole lives for a drug that will change their lives. Recently, a pill called Trikafta became available in Canada. It was the closest medicine to a cure that I took for the first time that morning.
The fact that I was so overwhelmed by the miracle of it all struck me as odd. I’m not one to use that word: miracle. My relationship with CF has always been precarious and full of pitfalls. I’m sick, but maybe not sick enough for my illness to be obvious. I have never been hospitalized since I received my diagnosis at the age of six, I have never been on an IV antibiotic like so many others and I have certainly never been on oxygen or on standby of a lung transplant. So with all that good health and energy, I always felt it was my duty to stand up for those who couldn’t. Those who are out of breath from walking. Those who spend more than half the year in a hospital. Those anxiously awaiting new lungs.
Every speech, every conversation I’ve ever had about CF has been prefaced with “I’m not the best example of the worst CF”. I said at fundraisers, “Don’t think of me when you think of CF, I’m incredibly healthy and lucky, unlike most of my friends. Think of their pain, their struggle. I wore it as a badge of honor: I’ve never been sick so don’t pity me.
Yet that morning, when the clear and beautiful breath came, I was simultaneously filled with joy, and with miraculous gratitude, dare I say. The recognition that for 51 years I have in fact have been sick enough. I have been out of breath, I have struggled, I have experienced more pain than I have ever acknowledged. Isn’t that crazy? My lung function has always been weak. Measured in forced expiratory volume (FEV1), a healthy person probably has an FEV1 of 120. I’ve been in my 60s for a decade.
From the day I was born, I had broken lungs, a failing pancreas, weak intestines, and a myriad of disgusting symptoms. As I got older and the disease continued to bite, these things got worse. Some days were worse than worse, and some days were bearable. It is not a disease where you are suddenly attacked and ravaged. It’s a disease where, hour after hour, the tissues in your lungs break down, the pancreas deteriorates, the intestines slowly clog, and you just learn to live with it. Your brain adapts and you accept the worst. Do your best. Get the drugs you can. Take the treatments. And the grinding continues.
But days after taking Trikafta, I’m no longer out of breath climbing stairs, I can hold my breath for a whole glass of water, I can sing longer lines in Adele’s songs, and I go a whole day without a single abdominal cramp. Now I wake quietly to birdsong, stretch my arms above my head, fluff up my pillow and lay there, cradling my dog, rubbing his ears, watching the sun come up, no crackling in lungs, no piercing cough to force me out of peace and quiet.
I’m still looking for a magic word to describe the beauty and seriousness of my new breath. The only one that comes close is tingling. Every cell, every space of my body comes to life. I have never felt so high, so grateful, joyful and yet serene at the same time.
After this first new breath, I never managed to put this screw in place. I took the risk that it was not too important. I decided to stop trying and sit in the sun to take it all in. I decided not to think about the fact that cystic fibrosis would undoubtedly end my life, despite medication that was close to a cure.
Instead, I took the plunge and came to terms with the fact that yes, I’ve been sick this whole time and always will be chronically sick. But for now, I won’t have to live with the worst. I can hope for the best. Therein lies the miracle.
Debra Mattson lives in Newcastle, Ontario.
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